Re: Plaquenil -- who has experience or knowledge

[Guest guest]

n has been on plaquenil for five years. You have to go to the eye doctor every six months to check for retina damage that is reversible. It is pretty rare, but better safe than sorry. n hasn't had any side effects that we can see. She is also on naprosyn and after January's flare, prednisone. We are now at 4mg. (n,15,systemic)

Plaquenil -- who has experience or knowledge

Hi all,Just got back from the rheumy and he's adding Plaquenil (hydroxychloroquine) to the cocktail for Hunter. The reasons are that his rash is still there after being on mtx for 7 1/2 months, though very faint, and Hunter has had a couple episodes in the last six weeks (elbow very sore for 4 days, groin/hip sore for two days, andn slight knee pain today). His last three months sed. rates were 1, 1, and last week 9. Of course I'm concerned about adding something else when he seems to being doing great, but not perfect. I talked to the rheumy about this and his goal is "perfect". I guess that really is my goal also, if it is possible. He's also still on low dose pred. at 5mg, going to 4mg tomorrow and drop 1mg every two weeks.Rheumy feels Plaquenil can make the mtx somewhat more effective, can help with the rash and, not sure I got the next part right or what the significance is --- reduces antibody formation and deposition of the blood vessels.I know Plaq. is a DMARD and have read the brochure about it. It needs to build up in your system for possibly over a month before it takes effect. Side effects can be tummy/bowel issues, headache/dizziness, skin rash/itching, and vision changes.The big eye possible side effect (1 in 5000) is injury to the retina. With Hunter being systemic and getting iritis (rare), I feel almost destined to get this other eye problem, but will stay hopeful.Can you please share your knowledge and experience with Plaquenil??? Also, what other drug combos were involved and why.Thanks so much,Stacia and Hunter,8,systemic,iritis

[Guest guest]

Hi ,

I remember we talked last Feb.-ish timeframe and you're in Portland,

right? Thanks for the reply and I knew that some people here were

on Plaquenil, but I just couldn't remember who.

As far as the eyes go, we're already on an every month checkup for

the iritis, so I feel we'll get pretty good coverage looking for

retina damage.

I also remember you were going to visit a second rheumy about the

time we were talking. What did you think of the first one versus

the second one?? Any changes with drug strategies or philosophies?

Nice to hear from you and thanks,

Stacia and Hunter,8,systemic, iritis

> n has been on plaquenil for five years. You have to go to

the eye doctor every six months to check for retina damage that is

reversible. It is pretty rare, but better safe than sorry. n

hasn't had any side effects that we can see. She is also on

naprosyn and after January's flare, prednisone. We are now at 4mg.

(n,15,systemic)

> Plaquenil -- who has experience or knowledge

>

>

> Hi all,

>

> Just got back from the rheumy and he's adding Plaquenil

> (hydroxychloroquine) to the cocktail for Hunter. The reasons

are

> that his rash is still there after being on mtx for 7 1/2

months,

> though very faint, and Hunter has had a couple episodes in the

last

> six weeks (elbow very sore for 4 days, groin/hip sore for two

days,

> andn slight knee pain today). His last three months sed. rates

were

> 1, 1, and last week 9. Of course I'm concerned about adding

> something else when he seems to being doing great, but not

perfect.

> I talked to the rheumy about this and his goal is " perfect " . I

> guess that really is my goal also, if it is possible. He's also

> still on low dose pred. at 5mg, going to 4mg tomorrow and drop

1mg

> every two weeks.

>

> Rheumy feels Plaquenil can make the mtx somewhat more effective,

can

> help with the rash and, not sure I got the next part right or

what

> the significance is --- reduces antibody formation and

deposition of

> the blood vessels.

>

> I know Plaq. is a DMARD and have read the brochure about it. It

> needs to build up in your system for possibly over a month

before it

> takes effect. Side effects can be tummy/bowel issues,

> headache/dizziness, skin rash/itching, and vision changes.

>

> The big eye possible side effect (1 in 5000) is injury to the

> retina. With Hunter being systemic and getting iritis (rare), I

> feel almost destined to get this other eye problem, but will

stay

> hopeful.

>

> Can you please share your knowledge and experience with

> Plaquenil??? Also, what other drug combos were involved and why.

>

> Thanks so much,

>

> Stacia and Hunter,8,systemic,iritis

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

Both rheumies agreed. We wanted to know if we should put n on mtx. n has a tough time in the winter, and then slowly works out of it and does pretty good the rest of the year. They both thought, without any collaboration, that the mtx would take awhile to work and she would be improving anyway with her history. Then we wouldn't know if it was helping or not. They both felt it unnecessary. We thought our original doctor was being too conservative, but the second doctor echoed what the first told us. The second doctor was trained at Cincy, so it made us feel a bit better. n is having a harder time coming off of the steroids this time, or maybe I am more impatient in my old age. (n,15,systemic)

Plaquenil -- who has experience or knowledge> > > Hi all,> > Just got back from the rheumy and he's adding Plaquenil > (hydroxychloroquine) to the cocktail for Hunter. The reasons are > that his rash is still there after being on mtx for 7 1/2 months, > though very faint, and Hunter has had a couple episodes in the last > six weeks (elbow very sore for 4 days, groin/hip sore for two days, > andn slight knee pain today). His last three months sed. rates were > 1, 1, and last week 9. Of course I'm concerned about adding > something else when he seems to being doing great, but not perfect. > I talked to the rheumy about this and his goal is "perfect". I > guess that really is my goal also, if it is possible. He's also > still on low dose pred. at 5mg, going to 4mg tomorrow and drop 1mg > every two weeks.> > Rheumy feels Plaquenil can make the mtx somewhat more effective, can > help with the rash and, not sure I got the next part right or what > the significance is --- reduces antibody formation and deposition of > the blood vessels.> > I know Plaq. is a DMARD and have read the brochure about it. It > needs to build up in your system for possibly over a month before it > takes effect. Side effects can be tummy/bowel issues, > headache/dizziness, skin rash/itching, and vision changes.> > The big eye possible side effect (1 in 5000) is injury to the > retina. With Hunter being systemic and getting iritis (rare), I > feel almost destined to get this other eye problem, but will stay > hopeful.> > Can you please share your knowledge and experience with > Plaquenil??? Also, what other drug combos were involved and why.> > Thanks so much,> > Stacia and Hunter,8,systemic,iritis> > > > ------------------------------------------------------------------------------>

[Guest guest]

Thanks for the update on n, ,

I really hvae been curious about that and glad you seem satisfied.

Stacia

> Both rheumies agreed. We wanted to know if we should put n

on mtx. n has a tough time in the winter, and then slowly

works out of it and does pretty good the rest of the year. They

both thought, without any collaboration, that the mtx would take

awhile to work and she would be improving anyway with her history.

Then we wouldn't know if it was helping or not. They both felt it

unnecessary. We thought our original doctor was being too

conservative, but the second doctor echoed what the first told us.

The second doctor was trained at Cincy, so it made us feel a bit

better. n is having a harder time coming off of the steroids

this time, or maybe I am more impatient in my old age.

(n,15,systemic)

[Guest guest]

Hi Stacia:

I hope the sed rate stays down!

Caitlin was on Plaquenil along with MTX, Prednisone and Cefzil. Although,

while she was on it the damn rash still came along every evening. She was on it

for approximately 3+ months.

We are not sure if Caitlin was reacting to the Plaquenil or what. We do know

the Prednisone was causing her depression and the MTX was causing her hair

loss, but we are not sure what was causing her the headaches, possibly the

Plaquenil.

Since I had heard about eye problems related to Plaquenil I did take Caitlin

to her opthamologist for a baseline checkup/field vision test. All looked

AOK. Definitely ring the opth. and tell him/her that Hunter is now on

Plaquenil.

Take care.

Patty

[Guest guest]

Hi Stacia,

They added 200mg Plaquenil to s 25mg MTX when wew were stuck on the Enbrel waiting list for 9 months.We seen nothing at the 6 month mark.We were told it probably wouldn't help and that it was a desperation drug.Georgina just posted recently that it is now considered a pretty useless drug.I hope I don't sound mean,just our experiance and our rheumies thought about it.There are studies that show MTX and Plaquenil are better then MTX alone but that was not our experiance.

Is Hunter mature for his age?I know he is 8 but it is not recommended anymore to kids 7 or under because they don't have the verbal skills to be able to explain any vision problems.Sorry to be such a downer. I just don't like the drug but it has helped others.

Hugs

Becki and 5 systemic

[Guest guest]

Stacia,

I forgot to add that did end up on the Enbrel along with the MTX and Plaquenil.He responded very well.They droped the Plaquenil after a month on Enbrel,he breezed right off the steroids and this was a kid that could not go below 9mg,he breezed right off the massive doses of Ibuprofin and has gone from 25mg MTX down to 5mg.In all honesty though,I don't know if the insurance company would have approved the Enbrel if he hadn't tried the MTX/Plaquenil combo and still failed.

Hugs

Becki and 5 systemic

[Guest guest]

Stacia... Our Rhuemy told us that we couldn't try Enbrel before MTX failed because of insurance. I am not sure if they can put Caroline on Plaquenil because last time I checked it wasn't available in liquid form. So, the the MTX doesn't work, our rheumy said we will be going strait to Enbrel.

Alia and Caroline, age 2, poly and uveitis

-----Original Message-----From: Arthurnator@... [mailto:Arthurnator@...]Sent: Thursday, April 22, 2004 1:30 PM Subject: Re: Plaquenil -- who has experience or knowledgeStacia, I forgot to add that did end up on the Enbrel along with the MTX and Plaquenil.He responded very well.They droped the Plaquenil after a month on Enbrel,he breezed right off the steroids and this was a kid that could not go below 9mg,he breezed right off the massive doses of Ibuprofin and has gone from 25mg MTX down to 5mg.In all honesty though,I don't know if the insurance company would have approved the Enbrel if he hadn't tried the MTX/Plaquenil combo and still failed. Hugs Becki and 5 systemic

[Guest guest]

Thanks Patty,

We already have an ophth appointment for Monday (had made it a month

ago at the last appt).

Stacia

> Hi Stacia:

>

> I hope the sed rate stays down!

>

> Caitlin was on Plaquenil along with MTX, Prednisone and Cefzil.

Although,

> while she was on it the damn rash still came along every evening.

She was on it

> for approximately 3+ months.

>

> We are not sure if Caitlin was reacting to the Plaquenil or what.

We do know

> the Prednisone was causing her depression and the MTX was causing

her hair

> loss, but we are not sure what was causing her the headaches,

possibly the

> Plaquenil.

>

> Since I had heard about eye problems related to Plaquenil I did

take Caitlin

> to her opthamologist for a baseline checkup/field vision test.

All looked

> AOK. Definitely ring the opth. and tell him/her that Hunter is

now on Plaquenil.

>

> Take care.

> Patty

[Guest guest]

Becki,

Thanks for the info. We see the ophth monthly, so I am OK with

that. I know it is not a super powerful one, but I think the rheumy

is focusing on the faint rash that has never gone away.

Stacia dn Hunter,8,systemic,iritis

[Guest guest]

Alia,

Ii thought we were headed down the Enbrel path also until

yesterday. The plaquenil thing kind of threw me for a loop. And

then to hear we probably won't do Enbrel, but do Kineret if we need

to go to the biologics.

I don't like surprises. I like to research things and know

everything possible before making a decision. For the last 9 months

we have been discussing possibly Enbrel, then Humira then

thialidimide, in that order as needed. Kineret and plaquinil were

never discussed.

However, I am open to change if new information is available, and I

guess it is, especially about Kineret specific to systemic.

Thanks,

Stacia and Hunter,8,systemic,iritis